Viral Meningitis

I contracted viral meningitis on 4th June 2015. It is 19th August 2015 and I am still suffering with debilitating fatigue and a "funny head".

When I say funny head the symptoms include fuzzy/foggy feeling,memory problems, throbbing spinning sensation, tinnitus, can't stand noise or busyness, I get aggravated very easily which is totally out of character and get very anxious about the most trivial of things.

I am worried about how long it is going to take to get well again. I have not returned to work yet and feel that I will be unable to go back any time soon due to the nature of job I do.

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  • Hi,

    Unfortunately 2 months is still very early on in the recovery and you are not alone in how you are feeling. I had viral meningitis in Feb and am still not fully recovered although I do feel much better than I did. You described exactly how I felt for several months but things did get better.

    The best advice I was given was to listen to my body and not to rush. On a good day, I could slowly walk up the road so I did but I didn't plan anything for several months to avoid the disappointment when I couldn't do it or push myself to do and make myself feel ill. I made the mistake of going back to work too early (after 3.5 months) and it resulted in me feeling a lot worse. After another month, I went back on a phased return. I also found cranial osteopathy helpful as I got a lot of neck pain and headaches. I still have this now as I still get headaches which are now treated as migraines. If I am careful and avoid triggers, I am almost back to my usual self (just get tired easily). However, I still find supermarkets sensory overload!

    If you haven't already done so, I would look through this forum (There are a lot of posts similar to yours with excellent information) and give the helpline a ring. Viral meninigitis is often misunderstood but I found them to be very helpful in terms of practical advice and understanding. Most importantly though be kind to yourself.

  • Thank you for your kind words and advice.

    Up to last week I didn't know where to look for information. Then just by chance I found Meningitis Now, and in turn this forum, and already I feel much better informed.

    I realise now I was being unrealistic to think I would be back to normal in 3 months.

    I aso realise by the advice given that the worst thing I can do is push myself.

    I feel lucky to have found this out relatively early in my recovery, I am sure it can only help.

    Thanks again for taking the time to respond!! :-)

  • Hi there, really sorry to hear what you've been through. I had Viral Meningitis in August 2014 so just over a year ago. The first 4 months were very hard for me - my body would crash in exhaustion if I overdid it (which I regularly did as I tried to get back to work) and headaches didn't allow me to spend more than one hour in front of a screen which made working impossible as I manage a charity. That part does get better, maybe not month to month but over a course of months.

    I found that a gentle exercise programme did help kick start my body after about 4 months - I did graded exercise, from walking 10 minutes to doing a walk jog programme over the course of about 2 months. I had a Physio help me with this and I do think it helped wake up my body without exhausting me.

    I took a lot of vitamins and supplements and I have no idea if they have helped but I spent a lot of time researching fatigue and head pain and tried to take supplements which helped those specific problems. I still do on the most part.

    It can be very hard and distressing to have to rest all the time - I found this part the worst as life is so anonymous. But it does get better - I went back to work on a phase return after 5 months and got up to full time by 7 months. I'm still not 100% but am finally at the point where I can live pretty normally again - I would NEVER have known it would take a full 12 months. I am still limited - I get tired quickly and still have the odd bad day, but nowhere near as bad as the early stages.

    So keep positive if you can, make sure you get help where you need it, and don't be too tempted to overdo it. I did 2 days of gardening about 3 weeks after VM as I felt myself getting stronger and I'm convinced that this set me back a long long time.

    Keep us updated :)

    Joe

  • Dear Joe

    Thankyou for your response!

    Up to a couple of days ago I didn't know where to look for help and information. I then discovered Meningitis Now who in turn put me in touch with this forum which has already proven invaluable.

    I thought that because the doctor had given me a 3 month sick note that I would be well on the way to recovery. I now realise that it is going to take much longer than that.

    I too am usually a really active person with a very busy lifestyle and career, so this is very hard!!!

    Having said that by looking at things on this forum I realise that my best chance at recovery is to rest as much as possible and listen to my body.

    I cannot read much at the moment, and can only look at my tablet with the brightness turned down for short periods of time, but I am going to read through the thread you have set up - so thank you in advance for that.

    Sharon

  • I had menigitise last June and when I came out of hospital I thought I could just do what I used to do I struggled and thought this is so strange how I feel the headaches and fatigue.i tried really hard to keep going thinking that's the way u till I am nearly house bound with pain in my head and body.The doctor does not se it as an after effect of meningitis and I am getting no support can you advise where I can get help from if you can I. Would appreciate it thanks .jean V M

  • Hi Jean

    I am sorry to hear that you too are struggling. I am just beginning to find some answers myself being only 2 months into it. Can I suggest you contact Meningitis Now. They sent me some excellent information via email and if you are in the UK you can ring them for advice and support.

    All the best!!

  • Thank you for your post yes I am in the UK I will send for the information .it sounds like you are getting it together I so pleased for you I wish I could I feel I have no life at the moment and I have even said to my husband who has been really good through all this that I hope I make it that's how bad I have felt.All the best to you x

  • Hi Sharon, I'm 13 years post near fatal VM and as others have said what you're experiencing is normal I'm afraid. the only and best way to recover is to rest and adapt what normal means for you. Although most often dismissed by the medical profession as a mild illness akin to flu, VM is often a lot lot worse and carries many more after effects. I won't bore you with my experience (I write a blog on this site to do that) but please listen to your body and if it says rest then rest. When you feel good, rest some more. If it's any consolation there is light at the end of the tunnel, I completed my third half ironman triathlon (1.2 mile swim, 56 mile bike, 13.1 run) last Sunday in 7 hrs 31 minutes in aid of Meninigits Now. Good luck, rest and if I can help please just let me know. Jonathan

  • Hi Jonathan

    Firstly, congratulations on your achievement!! I couldn't have done that even before VM!! :-)

    I feel blessed to have found Meningitis Now and this forum early on in my recovery. I was "pushing" myself to get better because I thought as the doctor had given me a 3 month sick note I ought to be feeling much more improvement by now. I now realise that was a total misconception and if I had continued like that I would most likely have impeded my recovery.

    I am not able to read too much at the moment, but I will take a look at your blog and read it over the coming weeks - so thank you in advance for that!

    I will keep your offer of help in mind, I could do with as much of that as possible at the moment, and especially from someone who has been through this and come out the other end.

    Thanks

    Sharon

  • Hi, so sorry to hear of your continued issues with the VM. Unfortunately as many others can share with you via their original post, it sometimes takes a while to recover if you ever do completely. However, many doctors believe it is normal to recover completely, therefore I assume there are those that have recovered completely. I wasn't one of them, however. The more the doctors told me I should be recovered, and offered no reason, why I wasn't, I tried to pretend I was OK, and pushed myself through the headaches, fatigue, and general malaise which I was feeling. After all I was supposed to be fine after a few weeks. (But I wasn't and my reward was not being fine, but was a relapse) I had repeated admissions to the hospital with high spinal fluid, or CSF white counts, and abnormal lab work. After many of these episodes, I discovered, I had to rest, and give my body time to heal. I knew no one, who had also had viral meningitis, so I had no one to visit with, as to how their outcome resulted. I am a nurse, and I didn't want people to think I was over-reacting or imagining my symptoms, so I hid them from others and tried my best to hide it from myself. It didn't work. At this point I am years away from my first hospitalization, which actually occurred in 1994. My last hospitalization was 2009. I learned the long hard way, give your body the rest, the attention, the nutrition it needs to heal, regardless of others telling you that you should be well in weeks. It might not be weeks, it might be months. In my case years. I strongly believe, if I had taken the initial time to recuperate I might not have had these last years of repeated episode after episode. I learned to avoid direct prolonged sunlight, never take Advil or medications with ibuprofen. So after all of this, I discovered this website, and have learned I am not the only one who has similar like experiences.-------------------Take care of YOU----------read the many post here----------- and allow your body time to recover. Best wishes.

  • Dear Sophie

    Thank you for responding to my post!

    I do feel incredibly lucky that I have found this forum early on in my recovery and received this valuable advice to rest.

    I was 'pushing' myself to get better, I now realise that this was a mistake and I am now resting as much as possible.

    Can I ask you why you don't take Advil or ibuprofen and why you avoid direct sunlight?

    Thanks

    Sharon

  • Please see Justin's post-- he describes some of the issues with Advil like meds

  • HI sopie, Can I ask you what was the connection with you talking ibuprofen and recovering from VM. You mention you learned never to take Advil or ibuprofen? Thanks

  • Snutrihead,

    There is literature which explains the lesson learned by me, the hard way. Advil is an ibuprofen like med. these meds have been associated with reoccuance of meningitis. my doctor advised to take the med and I learned the hard way as long as I took this med the headaches continued and I had repeated episodes. I will look for the link to some of the literature and get back with you.

  • I found this information and I have found that I had meningitis after taking Advil / Ibuprofen.

    journals.lww.com/md-journal...

    Medicine:

    July 2006 - Volume 85 - Issue 4 - pp 214-220

    doi: 10.1097/01.md.0000229757.78057.50

    Article

    Characteristics of Meningitis Caused by Ibuprofen: Report of 2 Cases With Recurrent Episodes and Review of the Literature

    Rodríguez, Susana Casas MD; Olguín, Adriana Manzur MD; Miralles, Carmen Peña MD; Viladrich, Pedro Fernández MD

    Abstract

    Abstract: Ibuprofen is a common nonsteroidal antiinflammatory drug that is the most frequent cause of aseptic meningitis induced by drugs. The incidence of this type of aseptic meningitis is increasing, mainly among patients with underlying autoimmune connective tissue disorder, but also among healthy people. We report 2 patients with recurrent meningitis caused by ibuprofen mimicking bacterial meningitis: the first patient a woman with dermatomyositis and the second patient a previously healthy woman who developed autoimmune thyroiditis a few months later.

    We then review 71 episodes of ibuprofen-related meningitis in 36 patients reported in the literature. Twenty-two patients (61%) presented with an autoimmune connective tissue disorder, mainly systemic lupus erythematosus, and 22 (61%) had recurrent episodes. Most episodes consisted of an acute meningeal syndrome with a predominance of neutrophils in cerebrospinal fluid (CSF) in 72.2% of episodes and elevated protein in the CSF, so the clinical presentation of this type of aseptic meningitis may be quite similar to that of acute bacterial meningitis. CSF glucose levels are usually normal, which may help to differentiate between these 2 types of meningitis. In some cases the clinical presentation is that of meningoencephalitis with neurologic focal deficits.

    Although based on the close relation between the administration of ibuprofen and the onset of symptoms, especially if previous episodes have occurred, the diagnosis of ibuprofen-induced aseptic meningitis is a diagnosis by exclusion. If the clinical picture is compatible with bacterial meningitis, empirical antibiotic therapy must be administered until negativity of cultures and other microbiologic tests is determined. Rechallenge to ibuprofen reproduces the symptoms and confirms the diagnosis, but is usually not advised.

    Whatever the clinical presentation, physicians must consider the possibility of ibuprofen-related meningitis or meningoencephalitis in patients taking ibuprofen, especially if they are suffering from an autoimmune connective tissue disorder. On the other hand, we think it would be appropriate to screen for autoimmune disease in previously healthy patients diagnosed with ibuprofen-related meningitis or meningoencephalitis. Finally, we propose that meningitis due to ibuprofen be included in the list of causes of recurrent aseptic meningitis.

    Abbreviations: CNS = central nervous system, CSF = cerebrospinal fluid, CT = computerized tomography, ICU = intensive care unit, NSAID = nonsteriodal antiinflamatory drug, SLE = systemic lupus erythematosus, WBC = white blood cells.

  • Agree with all the above. You must take it easy. It can be a long road but there is now a lot of help, and helpful people about who have been through what you are going through. I too have had a character change and find myself getting angry over little things. Take care and use all the services available.

  • Thanks for taking the time to respond Chris!

    I do feel lucky that I have found his forum early in my recovery, and I intend to take all the advice possible.

  • Hi xx

    Please don't feel like your alone,when I had vm a few years back now I thought I was being a wimp,I was so active before then got vm. Docs said recovery will be 6-8 weeks ,no other help given,then I found this page it helps so much ,I still suffer with spinal pain,memory loss and hearing over sensitivity,anxiety is a big issue due to hearing ...

    I pushed myself to quick as everyone kept saying its only vm not the bacterial one you should be fine by now,so pushed myself to the point I was re admitted which they said was another vm ,(1st vm-April ,second may ) then I learnt to rest .. So because I was so active before the resting was very difficult especially with kids,I decided to have one day out of three out,the making sure I rested as much as possible,it's such a hard thing to have and suffer from because it has no proper recognition by the GPS ,they just leave you to get on with it,

    Regarding work,I had a year off I work in a physical job and there was no way I was fit for work,however I gradually increased my days out and then done a phased return,at first I was so exhausted I cried but it got easier. Xx hope you manage the after effects ok ,, x just remember not to push yourself to early

  • Dear kel80

    Thankyou for taking time to respond!

    You are right, it is so hard to do nothing when you are usually very active. I feel lazy! But having read quite a few posts now I realise that is the only way to get better.

    Sharon

  • This forum is wonderful for the support that we can give each other.

    I am now three years post- Bacterial Meningitis and still unable to do many normal things. I have bad pain in my head at all times, but at least now the level varies giving me some better times amongst the searing pain. Going in cars is dreadful - I can only travel if it's essential by lying in the back with pillows, earplugs and an eyemask. Even then it can take me three days to get over the terrible level of pain and get back to my usual level of pain. I cannot bear any sun on my head which makes being out of doors impossible on many days, can't use a phone, listen to the radio/music or watch tv. Can't be in loud places and the constant pain in my head means I'm unable to work.

    As those of us who use this site all know, this is a very long, slow recovery process. VM is milder than BM, but we're all suffering and I very much hope that you (and everyone else on here) finds relief soon. Take it easy. I find forcing myself to lie down for an hour mid-morning and mid-afternoon helps. Meditation is wonderful as it not only helps get the pain down, but it helps me to feel calm about facing this three year ordeal. Eat well and drink lots of water.

  • Dear Shannon

    Thank you for your kind words and advice! I was considering going to see a naturopath for nutritional advice and I will look into meditation, not something I have ever done before, I am usually an active relaxer, but this illness is going to force some changes in my life, I see that.

    Best wishes in your continued struggles.

    Sharon

  • I too am normally extremely active. For all my life until this illness struck, I was up by dawn and out of the house, running, cycling or kayaking followed by a swim or gym before heading to the lab or to lecture (I'm a neuroscientist at the University of Sydney). It is incredibly tough to face this non-stop pain and the limitations it's put on my life (and my husband's life too). But we just have to accept it with as much grace as we can muster, get on with the things that we can do and be grateful. I know VM is not as severe, but your suffering is sad to hear about and I hope you recover much more quickly than I am.

    Do try meditation. Amongst the other things I've tried are flotation tanks, acupuncture, nutritional changes (primarily eliminating foods thought to be inflammatory like potatoes, tomatoes, aubergine...), acupressure and physio (to help with my neck - Like many meningitis survivors, because the meninges lines the spinal cord, we often suffer from terrible pain and stiffness in the neck. I couldn't turn my head in any direction or look up/down for over a year).

    We're all thinking of you (and of each other). Take good care, rest and sleep a lot and just be kind to yourself. You WILL recover :)

    Shan

  • Hello - I am 2 years post VM from July of 2013 here in Arizona. All the fine folks who are on this great website are spot on. Everyone's body is different and it takes time and rest to recover from this. The doctors here, although trying their best, do not yet seem to understand the after effects of this illness. Especially when they do all of this blood work and it comes back negative, they tend to look at me like I am crazy. As the other folks have said you will start to pull out of this, it just takes time. In the early stages of my recovery being able to read these blogs and folks own stories really helped me from being down and out. You will get better!

  • Thank you so much for your words of encouragement!!

    I am feeling so lucky that I found this forum early in my recovery, so much good advice and stories from people who have been through what I am struggling with now - at least I know I am not going mad! :-)

  • I had VM 12 months ago. Your experience sounds so similar to mine. I thought I would be back to normal quickly, how wrong was I. I unfortunately had an infection at the same time so was basically fighting both so will not know what symptoms went with what. Till at least the December I could not tolerate loud noises and would get extremely dizzy and anxious over the slightest thing. The headaches were horrendous and I was prior to this an extremely healthy person. My doctor said this was in one sense good as I would recover quicker but emotionally it hit me hard as for a long time I couldn't do normal stuff. It though not categorically linked left me with still terrible headaches which I am on treatment for and I went back to work after 6 months as I was determined to do so much to the amazement of my doctors as even now they say they expected 12 months before being full time. I am a teacher and it has been extremely hard and work have been extremely supportive but there have been times where I have just cried in frustration as I have had to phone family to come and get me as I just couldn't carry on. Do what your body tells you and it is no time at all. Take care

  • Thank you so much for your response!

    We are more alike than you realise! I too have a secondary infection in my liver, also viral, and my doctor has no idea which came first or if they are linked.

    Plus I also work in education. I am the Director of International Students in a secondary school here in NZ, which means I am in charge of the pastoral care of around 30 students. At this stage I just can't bear the thought of being in a busy school environment, surrounded by teenagers!! I hope, like you, that I will be fit by 6 months (now realising that 3 months was a unrealistic expectation), but only time will tell.

    I will rest and take care as you suggested.

    Sharon

  • Mine was Bacterial Meningitis and I too had secondary infections (pneumonia and pleurisy). Two and a half years post-BM, I'm still not well enough to be back in the lab or with my clinical patients (I'm a neuroscientist). But at least I do have brief 'better' moments when the pain subsides which is giving us hope that eventually I'll make a full recovery. Time and rest seem to be the biggies with this, whether it's VM or BM.

    All my very best wishes.

  • Hi Sharon,

    I too went through this in April/may this year. I also feel blessed to have found this site as I also got sent home after 3days with ibropuren and paracetamol. so sorry to hear about your experience. I have learned a lot from this site and it's reassuring to know that rest is the key. Frustrating as I know first hand, especially like me you were very active and with children too. Running cycling and having a physically demanding job of which I have not been back to yet. I do not intend to return to this for at least a year. I work 2.5 days a week now and that's in a studio with adults with learning disabilities which is good as there is no pressure and these lovely students are very caring and glad to have me back In work. I take it very easy and rest as much as possible in between activities. Yes I feel lazy but I want my life back and I've learned from reading posts on here that you can rest and get better or fight and prolong the experience. I eat really healthy and take supplements to help my immune and energy they help immensely. I don't take any medication at all. I drink aloe Vera gel with added supplements of Msm which is like a natural anti-inflamitry so good for aches and pains in my body. I also have had reflexology weekly which helps too. Look after yourself and rest lots. It's so nice to have people on here to chat to about there recovery we are not alone.

    Wishing you well my dear please keep is posted on how you are doing xx

    Toni

  • Hi Toni

    Thanks for taking the time to respond to my post. I really like what you said "I want my life back and I have learnt from the posts on here you can rest and get better or fight and prolong the experience". I am going to adopt the same attitude!!!

    I was also interested about the natural remedies you mentioned. I am going to a naturopath this week to see if she can be of any help.

    So hopefully when I post in a few weeks there may be some improvement.

    Thanks for your support.

    Sharon

  • My meningitis was bacterial. But I also have fuzzy foggy feelings with dizziness my ears ring constantly, I have total muscle weakness, my memory continues to be an issue. I have a problem with time sequencing, I still feel like I went to sleep and woke up different as if it was yesterday. It's been 8years. I'm walking and talking. I have all my limbs and should feel grateful

    But I'm having difficult time making sense of my life. I feel as though I'm frozen in place. I rember people from my past but not specific events or times. For me its not going away. I'll never be the same. Don't mean to worry you. It's just that you may need to find a way to start with what your feeling now. Start moving forward now with your life don't wait for it to go away. I did that and I've waited so long to feel normal that I wasted 8years trying to be the same. I'm not. And I'm now trying how to piece a life together. I can't make decisions. My brain is chaotic and cluttered. And I'm very moody.

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